Hi there! I’m new to this forum, but need some help with hypoglycemic episodes.
My husband is T1D and has been for over 20 years. We’ve been married 12 years and he has always been on a Medtronic pump. His A1c increased recently, so his endo started him on the T:Slim with Control IQ (in April of this year). The Dexcom and notifications have been awesome, but we have been dealing with a significant amount of lows. In the 12 years we’re been married, only one other time did he have a diabetic seizure, and he had another recently that I had to call 911 for. He has daily lows- often below 50 and we’re having a really hard time trying to figure out how to manage these. He cannot eat constantly and we’ve found that that is almost the only way to prevent them.
Here’s a little background on him: he works shift work, so works a few nights in a row and then switches to days. His job is physically tough, so he is in constant exercise mode and turns the pump to that when he gets to work. Even with this, and eating right before he gets to work- he will still drop to below 50 within a couple hours. I’m at my wits end, because the lows worry me like crazy. If he is working nights and the Dexcom goes off- all I can do is sit there and watch for it to go up.
When he recently had the diabetic seizure, the CGM notified me that he was low (said 55), I got up and gave him some juice, but he was more unresponsive then he would normally be with a BG of 55. He drank 12ozs of juice and I waited. He was not improving, so I gave him more. He had almost 48ozs of apple juice in about 30 minutes and then started seizing. CGM would only register LOW at that time. When the paramedics came, they gave him a full bag of D5 and had me make him a PB&J and milk. He was with it and responsive by then, so they didn’t transport him. He did not enter ANY carbs for anything that he ate. BG increased to just over 100 and in less then 2 hours, was 74 again.
I have realized that juice (which is our normal “rescue med”) will quickly bring up his BG but not sustain it with this pump. He has had to start also having a snack to make sure that it will stay up whereas in the past with the Medtronic pump, that would last him through the night. I’m at the point that I feel like maybe this pump is not right for him, simply because you cannot adjust the basal rate to be higher. Another thought I had is if switching insulins would make a difference (he has been on Humalog for as long as I’ve known him).
Any advice on dealing with this would be appreciated.
Are there certain snacks that help keep it up during physical activity (protein shakes, certain types of carbs)?
Has anyone had luck with decreasing how many carbs they account for to see if their BG would stay higher?
Has anyone had less hypoglycemic episodes on other insulins?
Even with exercise or sleep mode in place having the right basal/s in the first place is key - if the rate is too high the algorithm can’t work fast enough to slow the drop. I’m finding I need to adjust mine as I do tend to go lower than I would like, and I need snacks to bring me back up. It’s a work in progress.
You said you can’t adjust the basal rate to be higher - I’m wondering how high you need it, and why you would want to raise it if he is going low? I checked and basals can be set from as little as 0.1 to as high as 10 units/hour.
Your husband’s need for something to keep him level later may be because his body has different needs than it used to, and it’s only coincidentally related to the different pump. Of course that’s just a theory - I haven’t used Minimed’s system so I could certainly be wrong. I’ve found for myself that I do need a little something extra to stay steady after a low, even before I started CIQ, and I’ve used TSLIM for years.
We pump people usually get comfortable adjusting our own rates, but given that you’ve had to call 911 it might be good to discuss with his doctor. He could set different profiles for “day shift” vs “night shift.”
You both might meet with a nutritionist for a refresher if you think you need one. Mine suggested yogurt as a good bedtime snack to hold me over - again that assumes a good basal rate - and they could recommend some post-low foods, but graham crackers, or cheese/peanut butter crackers might help.
It sounds like it would be good to keep a glucagon emergency kit on hand - it might be easier than getting him to eat if he goes low, and may give a quicker response. There is a new form that can be inhaled - much easier to handle in an emergency.
Wishing you all the best - I’m so sorry you two have to go through this but he is blessed to have you.
Thank you, Dorie. We have talked with his endocrinologist and they have made some adjustments a few different times now, but it has continued. Since we’re still learning this new pump, I do wonder if it’s just something we have to work through- but it’s scary with all the lows! When I mentioned not adjusting his basal rate, that’s because I read that the CIQ has an automatic setting to keep BG’s at 110-130. When he works (especially) his BG cannot be that low because it will quickly drop too low. Even with the exercise mode it still does not increase it enough. But since you mentioned it CAN be adjusted, we will definitely have to look into this and get with his doctor again.
I recently just heard about the new nasal spray glucagon. It will be something we look into for sure! I appreciate all your suggestions.
I’ve discovered that small changes in my basal rate - even just 1/10 of a unit - can work wonders, but it does involve some tweaking (btw, you can adjust to a couple of decimal places). I imagine your endo is making small adjustments so as not to overdo it, but maybe in your husband’s case they could be a little more aggressive. If it were me having the same experience I would rather decrease by 2 or maybe even 3 tenths and possibly go a little high - and then increase the basal slightly, but by bit, until I’m in a good stable range - than make those 1/10 unit decreases and still suffering those frightening lows. That’s my example - use it as a guide and discuss with your doctor. Please keep us posted - we’re here for you! And as I type this I see my friend Dennis’s picture pop up - it looks like he’s joining in. He’s a huge storehouse of experience and knowledge, believe me!
@NLStewart Hi Nicole, and welcome to the JDRF TypeOneNation Forum! I am NOT a medical doctor, so my suggestions here are based solely on what I’ve learned during the last seven decades living with diabetes.
As Dorie @wadawabbit said, basal rates are the most important factor in using any insulin pump, followed very closely by insulin to carb ratios, and sensitivity factor. If these three items are not correctly entered into the Active Profile, a pump algorithm, even the truly awesome CIQ, will never work. I’ve used CIQ since January 2020 and it has continually kept me in range more than 90% of the time. I’ve also been able to totally avoid hypoglycemia,. Adjusting basal rates should be “old hat” to your husband after so many years living with diabetes, something he should be able to manage on his own. The settings i had on my old MiniMed pumps fit nicely into my Tandem Profile.
I suggest that your husband set up several Profiles, i use 5, to match his various work schedules. He will need to think ahead and activate the Profile that matches his work. On days that I know will be heavy and intense labor, not only is my basal about one half of other days, but my bolus ratios are also reduced.
When neither Sleep nor Exercise modes are selected, CIQ attempts to maintain BGL at 120 mg/dl. During Exercise, the goal is 140, and during Sleep Mode, attempts to hold at 110 mg/dl.
CIQ is the closest diabetes management tool to Plug-n-Play, but it still needs user awareness and, more importantly, it demands accuracy of basal and bolus rates and ratios. With the basics in place, i can run “hands off” other than entering my guess at carb count.
@NLStewart, you have received some good suggestions in other comments. I was on Loop, a DIY “artificial pancreas” using G solution for over a year before I went to Tandem, and that gave me a head start. I still had troubles with lows, but not to the extent of your husband. Moving to an AID, automated insulin delivery, system is a different animal. Most people need to completely retest their basal rates, carb ratios, and correction factor/insulin sensitivity factor. As you’ve seen, your husband can’t eat enough to keep from going low, so he’s getting too much insulin. Some of that extra insulin could be because the basal rate is too high, some could be because his carb ratio needs to be changed to deliver less insulin - like changing from 1:10 to 1:11. The thing that stumps a lot of people (and endos) when they move to an AID is the Correction Factor or ISF. When an AID algorithm automatically responds to try to correct an increasing blood sugar, it uses the CF/ISF in its calculation. To decrease the amount of insulin delivered because of CF, you increase it to a bigger number. For example, going FROM 1:60 TO 1:70 will cause CIQ to reduce auto-corrections. If I was having the kinds of emergency lows you are describing, I would start by modifying all my settings to decrease insulin delivery, then I would try to take a long weekend to test basal rates, then carb ratios, then correction factor. If you use Facebook, there are a number of closed groups that can help you work out details, including Tandem Diabetes Control-IQ Users’ Group.
Hi - me again (I’m baaaack!!). I get ideas in fits and spurts so I apologize for yet another reply, but…
Just wondering - when you switched to Tandem and CIQ, did you do any hands on training or just the training online? Thinking back on various posts I’ve seen in the forum it seems people run the gamut. I myself had been using the T-Slim with Dexcom G5 for years, so I just did the online video, and my rep told me I could contact him if I had any questions or needs, but I didn’t do anything in person. If you didn’t get any in person training on the Dexcom G6 and/or the TSlim pump you might want to meet with the rep to make sure you have a secure knowledge of the features. Although you switched from one device to another and the basics may be the same, it’s good to be comfortable knowing the ins and outs of the new one.
This is great information. We will definitely be sitting down to try and adjust things and add some profiles like you suggested. What mentioned about maintaining BGL is exactly what I read, but I understood it to be that this could not be adjusted. They did go off his old pump when they programmed the Tandem, but his lows were occasional with Medtronic (maybe once every couple weeks) and now they’re daily. So I’m just trying to figure out what the cause is.
We did go through about an hour long training session at his endo, but it was a lot of material. It might be helpful for us to reach out to the rep (it wasn’t the rep, but a nurse who did it) and see if we can meet with them for sure.
Thank you! We will start by looking at those settings and setting up some different profiles (like someone else mentions). I hope this is all that we need to do! I will definitely check out the FB page too. Much, much appreciated.
@NLStewart, let me also welcome you and your spouse to typeONEnation.
@wadawabbit & @Dennis are the real gurus of this part of this forum. I have one idea for urgent low blood sugar treatment. White cake icing in a tube. You do not want colors, especially RED - can lead paramedics toward carbon monoxide poisoning, or BLUE - can lead paramedics to believe oxygenation/breathing is bad.
I just thought of a wild idea. Do you keep a copy of your hubby’s profile on paper or in computer such that you can verify all of the basal settings around the clock? My ‘brain storm’ fired there may have been a transcription error entering values in the pump.
The idea for having different profiles for day shift, evening shift, and night shift is a great idea. As Dorie suggested, lowering basal insulin levels a very small amount every other day should help. Another idea is to note when the EMERGENCY LOWS are happening. Is it in the same time window almost every day? If it is, this is the place to look at decreasing the basal insulin in this time frame.
As Dennis shared, I am not a doctor, either. I have used a pump for about 15 years and currently use a t:Slim - CIQ + G6 also.
@NLStewart first of all, thank you for the compliment - and I am honored to be mentioned up there with @Dennis.
I also want to thank you about the info on cake icing. It’s not my treatment of choice but it never occurred to me that colors could have an impact - a very astute observation. If I go for something solid it’s usually Clif Bloks chews or lifesavers. I’ll have to find a different lifesavers flavor and will research the Bloks.
I started a topic called Helpful Hints: https://forum.jdrf.org/t/helpful-hints/6825.
You might add it there and get the ball rolling.
Another solid rescue is the candy SweetTarts, sold in rolls at convenience stores. The long rolls have 27 pieces. You can portion a roll, feeling with a finger nail into 3 sections of 9 pieces each. Most D rescues are 15 gm of CHO. 9 SweetTart pieces are just that. If desired, get some small ziplock bags a a craft store to protect the 1/3 roll portions.
The target BG numbers with CIQ cannot be changed (70-180), but you can set pump alerts to give a warning ahead of time so he can grab a snack. The highest for a low alert is 100 (sometimes I wish it were higher) but you can also set alerts to sound if he is falling (or rising) so he can keep an eye out.
When a person switches pumps or to CIQ, the basal profiles definitely need adjusting. I have always been the one to adjust my own. For example, if my blood sugar during the night starts wandering downward or upward two nights in a row, I figure the basal needs tweaking. I might change by .05 for a couple nights and then go from there, depending upon whether it levels off or still goes down or switches from down to up. With CIQ, I find I do not need the extra food for a low BG, since the basal rate will go to zero until it goes back to normal. But I have my pump set to notify me if my BG gets to 75 or 80, so I eat some carbs long before going into shock. (I have had only one insulin shock in my life, when pregnant, in 1978.) For physical activity, there is an “Exercise” activity setting. Again, the pump will resort to a zero basal when you set that as your “Activity,” because it raises the target range to 120-140. The best thing is to set the activity 30 - 45 minutes before starting the actual work or exercise. Otherwise, if I forget, then I just eat a small amount of glucose tablets before wandering around the supermarket or Wal-Mart or running for the train.
If he does become totally unresponsive at times it may be an idea to get some form of glucagon to keep handy. If he is in bad enough shape that he can’t eat you can administer the glucagon. In the past I have a had a couple of severe episodes and now keep it handy so that my wife and a few trusted coworkers know what to do. The older versions required syringes which made it harder to administer, but they now have a nasal inhaler which just about anyone could administer in a pinch… “Baqsimi” I have not had to use since I got it but it is comforting to know it’s handy. Have him talk to his endocrinologist for details. This is an extreme emergency back up in case it goes real bad.
Hi again @NLStewart. I got in touch with my Tandem rep for some input on settings to try to make my CIQ more effective. She took me from 4 settings throughout the day, to two: the basal in place from midnight-6am remained the same, and adjusted my carb ratio and correction factor, as well as basal rate from 6am-midnight. I think having one set of settings in place for most of the day will help determine what other changes may need to be made. So basically I’m pretty much starting over but I’m excited to see what happens. My doctor is great but sometimes it helps to have another set of eyes for input, especially when they’re from Tandem and are even closer to the technology. I just set things up yesterday afternoon and am already seeing some changes. Maybe your husband’s rep can make some recommendations.